Stephanie Florence

Told her cancer was incurable, a lymphoma patient pins her hopes on an immunotherapy clinical trial

May 13, 2016 | By Stephanie Florence, as told to Mary Engel

Lymphoma patient Stephanie Florence of Lewiston, Idaho, meets with Fred Hutch's Dr. David Maloney for a checkup in April at Seattle Cancer Care Alliance.

Photo by Robert Hood

It was in December of 2006. I was 34 and invincible. I knew I was sick, I knew something was wrong, but the diagnosis of cancer really was a shock. I was diagnosed Dec. 20, and I started chemotherapy Dec. 26.

Initially they told me that it was lymphoma, but they weren’t certain what type. I was still under the impression that even if you had a cancer diagnosis, you could have chemotherapy and potentially beat it. After all of the results and pathology came back, I found out that the type of lymphoma that I had — have — is considered incurable. I refused to accept it.

After I finished chemo … I researched everything I could find. According to my doctor, the cancer would come back. [What] clicked with me was being able to have something that could just target the cancer and not your healthy cells — I wanted some type of immunotherapy.

I had a scan in 2011 that showed something suspicious. That is when I sought out Fred Hutch.

I had done all of this research, through all of these years, and I kept seeing the same names. In my mind, there are these rock stars of lymphoma. And so I told my doctor, I’m going to go see either Dr. [David] Maloney or Dr. [Oliver] Press. I had seen Dr. Press’s and Dr. Maloney’s name on so many papers and knew that they were doing the most modern work in the disease. Then I actually found out that Dr. Maloney was doing an immunotherapy trial [at Fred Hutch]. He was involved in that CAR [chimeric antigen receptor] T-cell trial.

[But Dr. Maloney at first] recommended against the trial. The pathology [report showed that] my disease had transformed and was aggressive. He wanted me to have [a blood stem cell] transplant. And I did. I had the transplant in 2014, and it was successful. But unfortunately, the results didn’t last.

I knew I wanted to do [the immunotherapy trial]. I got my T cells July 2 [2015].

Everything I had read had indicated [there would be] side effects. But it was a walk in the park — I did not have any side effects. I thought side effects meant the CAR T cells are in there fighting this cancer — so maybe they’re not working. I was biting my nails.

On July 29, I got my results. Oh, my gosh: I was overjoyed. It was the most emotional moment of my entire 10 years of lymphoma. Not only did it work, but it worked 100 percent. I had a complete response. It was magical. It was a miracle.

I have always felt that for somebody like me — considered incurable — if I am going to get a miracle with modern medicine, it would come in the form of participating in a [clinical] trial. To beat the odds, I would have to do something different from what was traditionally offered. I knew that a trial would provide that chance for me.

There’s no way to know that I’m cured — it’s just too soon to know what the lasting results will be. But being able to participate in something like this – I can’t even say it’s life-changing. It’s too much of an understatement. I’m just so grateful for the chance to participate.

Some cancers are beatable. If you’re in a situation where your cancer is not, don’t give up hope. There is always a reason to be hopeful. There are times when it’s a really bad day, when things aren’t going right or you get bad lab results, and it can be a roller coaster of highs and lows. Just try and maintain. When I get a good scan report, I try not to be too excited about it because I know it can go the other way. I try to stay in the middle. I would just say [to others going through this], try to stay in the middle, and take it a day at a time.

But I’m not following my own advice now. I am celebrating. I am not going to worry about the next low. I am going to keep this high. I have earned it. After 10 years, I’ve earned it.

Fear that her lymphoma would return led Stephanie to seek out a Fred Hutch immunotherapy clinical trial.

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